living with RA

My blog is a place for me to share my "RA story" and experiences including how I manage Rheumatoid Arthritis on a broad basis and day to day with the realities of a progressive, chronic disease. Most importantly how to do it successfully and with a positive attitude.

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Wednesday, March 2, 2016

I started writing this blog back in April 2011, just about 5 years ago. I have posted 107 (counting today's post) blog entries and had nearly 118,000 "visitors" to my blog page.

A large part of why I started this blog was to allow me to share my story not only to help others who are dealing with chronic diseases, particularly RA, but also to give my experiences a voice and soul.

Blogging truly helped me to move outside of the traditional RA box and allow myself to heal my spirit. I needed that after nearly 15 years of coping with RA.

What I did not fully understand when I started was how challenging it would be to bear my soul on so many topics and issues related to my story. But oh how satisfying it became.

By taking the time to reflect and share it gave me such a feeling of hope and joy. It truly nourished me in ways I did not dream of when I started.

I found out just how much I had to share in terms of managing RA and I believe it touched other people and helped them as well. In fact as I read through the blogs I can clearly see how I evolved from simply sharing my thoughts, experiences, etc., to offering tips and strategies for managing RA.

So once the wonderful experience of blogging evolved into the ultimate purpose of why I write about RA it became clear to me that it was time to step away from blogging and immerse myself in the new adventure that began for me last March with Rheumatoidarthritis.net as a contributing writer.

The online newsletter they publish and the FB page they host reach thousands and thousands of people with RA! What an amazing opportunity it has been for me to share my story with so many wonderful folks!

I can now open up on an even larger and deeper scale and it has given me satisfaction and joy beyond my wildest dreams!

But it all started with a little blog 5 years ago and I never imagined it would lead to 107 posts and a chance to reach more and more folks who are struggling day to day with RA. I will be forever grateful to all of you who have read this and commented to me and shared your stories along the way. You inspired me, touched me and moved my spirit to continue to write and share my story.

So I am going to pause my blogging for now. I may start it up again down the road. In fact, I think that is very likely. I would encourage folks to read them from the beginning if they so choose because this blog follows my journey from day one with RA and has what I believe to be some universal lessons for anyone with a chronic disease.

And maybe you will take up your "pen" and tell your story at some point! I hope you will consider it. It was and continues to be one of the best decisions I ever made.

Tuesday, February 2, 2016

So today just happens to be Groundhog day and for those that believe in it, he did not see his shadow which means an early spring. Ironically this has been perhaps the mildest winter we have had in decades here in Vermont and so this is just icing on the cake!

I know that for those who love winter sports and of course for our ski industry it is not such welcome news. But for many of us, it is reason to rejoice. Winter brings with it the much more frequent possibilities of falling and as I am getting older I find that more and more terrifying. I really dread anytime I venture out after a storm or freezing rain. The prospect of having to go out and contend with frozen, snow covered and/or uneven steps and surfaces is very stressful.

I have found that using detachable treads on my boots like Yaktrax and keeping a set in my car is very helpful and relieves some of the fear. I also plan ahead so that if a storm is coming I like to get my errands done and then if need be I can hunker down at home.

I also can work remotely when absolutely necessary so I often bring home work in the winter so I am prepared for the potential of not being able to get into the office. It just makes no sense to endanger your life when work can be done from your desk at home! This mild winter has also meant that I can get to my pool for swimming more often than in past harsh winters. I head up to a ski resort to use their indoor sports facility and pool and so clear roads is critical for me!

I also find that I am much more likely to spend time outdoors, walking or enjoying some time in the sunshine if the temperature is not in the single digits. And so far we have had lots of those opportunities this winter.

Of course despite the mild weather one of my favorite pastimes in the winter is to curl up by the fireplace with a good book. No matter the weather outside this remains a wonderful way to spend a winter day.

It is so nice to even see some signs of new life peeking through the winter ground. Even if it only lasts a few days it brings a smile to my face and some color to our landscape.

So I am going to relish this lovely winter and look forward to an early spring - at least according to Punxsutawney Phil.Nan

Monday, January 18, 2016

Even now that I am in my 60's I still find the beginning of each year to be exhilarating. I think it is the notion that the new year is a like an open road before me offering all kinds of possibilities and adventures to explore.

Which road will I take? What will that next bend in the road have just beyond it? I find these thoughts and questions exciting and invigorating. And since having RA I also find that moving into the new year can be time to reflect on my own disease management and how the previous year turned out. What I might adjust for this coming year or what worked great?

I discovered the wonders of Tai Chi and intend to keep practicing it forever! So much so that I now teach it and that has added a depth and joy to the practice that I never imagined. I feel so much better both mentally and physically since starting Tai Chi. I highly recommend it.

I found a medication that is working for me! I have been through many medications over the 20+ years that I have had RA. One worked great for 6 years while others worked minimally. This past year I found the one that seems to be working for me - for now. I temper this enthusiasm with the knowledge that it may not last but I will enjoy it while it does.

I also embrace this thought when it comes to feeling good and flare free because as all of us with RA know, flares come and go, often with no rhyme or reason. Taking advantage of the good days to get my exercise and enjoy life is a large part of managing RA successfully. That means my beloved swimming!

I was so happy to get back in the pool after my broken foot episode in October put me on the sidelines once again. Once I was given the go ahead, I "plunged" right into that pool and never looked back. I look forward to this year being a great year of swimming.

So I may not be a runner anymore but that does not mean that I am not off and "running" in my own way to make this a great 2016! Keep up the effort. I wish you the best this year has to offer. Make it your best one yet. Nan

Tuesday, December 8, 2015

So Thanksgiving brought with it some really wonderful news this year in that I do not have to have surgery on my broken foot! I found out just a few days before I left for the holidays and I was elated to say the least. Everything was going to work out!

I was somewhat surprised as I had been told by no less than three different medical folks that "this bone does not usually heal well and likely will need surgery". Despite that dire prediction, I beat the odds!

I still am shaking my head in disbelief and wonder that I escaped this. How did this happen? Not sure but I have some thoughts. First of all I did not take the word of all of those folks to be gospel. I decided to call the surgeon who did my foot reconstructions and get his opinion. It took a few phone calls and signing releases, forwarding X-rays, etc. but it was so worth it! When I heard back he said in his opinion I would NOT need surgery and that the boot cast and forearm crutch approach would be just fine. Well that was sure welcome news! But I still was leery of what the 4 week X-rays might show. My foot looked pretty bad for sometime.

That said, I was told at the appointment where they did the 4 week X-ray that the extensive bruising, swelling and pain were largely from the tendon/cartilage injury that really was the root cause of the foot breaking. That made me feel a whole lot better. I was very careful to follow their suggestions for how to bear weight, etc. and it really paid off. At 5 weeks my foot is looking almost normal save for some minor bruising still around the lower ankle and at the toes. I'll take it!

I have been careful not to overdo which is always a challenge for me but one I have taken to heart since I did not want the holidays to be hampered with crutches and pain. That certainly kept me on the straight and narrow. The frequent reminders from family and friends kept me in line too.

I was so thrilled to be able to return to Tai Chi and swimming just 4 weeks into the injury. I actually believe that being able to engage in both of those activities helped the healing process considerably. I have to mention that doing Tai Chi was in many ways why the injury I sustained was not a lot more serious. When my foot slipped I was able to regain stability largely because of the Tai Chi principles and practices of weight bearing. The foot roll and subsequent injury and broken bone were the result of the uneven surface that I encountered when I put my left foot back down. Not because of lack of balance. I could have ended up head first over a balcony if not for the Tai Chi!

Monday, November 2, 2015

I am still trying to wrap my head around the fact I broke my foot a week ago. I simply stumbled and rolled my left foot and WHAM! I now have a fracture of the 5th metatarsal. It seems like only yesterday that I had my two foot reconstruction surgeries. Actually it was 2012 and 2013. Thankfully this fracture in no way compromised the wonderful result of the surgery. Still, I waver between relief that it was not worse and dismay that I may be facing surgery since this is a bone that often does not heal on its own. This according to several doctors who have seen the X-rays.

This photo was just a few days after I broke it and it looks a whole better now thank goodness. I have to say the pain is not too bad either. Mostly I am thankful that I can partially weight bear with forearm crutches and a boot.

The worst part of the past surgeries were the weeks of non weight bearing that I had to deal with. As a person who loves her independence it was such a challenge to have to rely on everyone around me for the smallest things. I also like to be up and moving, a lot, and often, and to have to be so stationary was almost more than I could bear! I never, never, never expected to be doing this again under any circumstances!

My husband and I had traveled to DC to visit two of our sons and attend a much anticipated Penn State football game in Maryland. The day before the game I simply tripped while walking to their balcony and rolled my left foot. In the photo above I still have on the splint that I had for several days till I got back home to Vermont. We woke up the day of the game and decided to give it a try. So off we went and it was a great day, great game and a victory for our beloved Penn State Nittany Lions!

The amazing staff at Ravens Stadium in Baltimore made the day for us. They exchanged our tickets for 40 yard line accessible ones and had a wheel chair for me to use as well. I cannot say enough about how wonderful there were in every way throughout the day! We were all so glad we went. It made an awful situation much more bearable. After we got home and I went to our local Orthopedic office I discovered I could, at least for now, put some partial weight on it with the boot on and forearm crutches. Anyone with RA knows all to well that traditional crutches are torture! I had to use them for a couple of days and my shoulders and hands were totally inflamed. My biggest fear remains not the surgery itself but rather the potential for non weight bearing time afterwards....I am going to hope and pray that I heal in such a way that it will not be necessary but I do not hold out much hope based on what the docs have told me. Yet another foot fault to deal with....Nan

Friday, October 2, 2015

Over the years of having RA I have found myself more and more reluctant to look at my image in a mirror (or any surface for that matter). Considering where that comes from is worth some "reflection". In a society that reveres all things perfect and youthful it has become increasingly difficult to not let the ravages of RA coupled with simple aging negatively influence my body image.

There are those few occasions when I feel attractive. A new outfit that fits thanks to a few pounds lost or my husband or sons telling me I look especially nice. But sadly those times are not common for most of us with RA. I find myself shying away from form fitting clothes no matter if they would look good or not simply because I have more belly than ever before thanks to years of prednisone use and the fact I cannot do traditional core exercises and, of course, the aging body. All of these factor into my own assessment of body issues that I am facing.

Despite trying to do positive self talk around this issue it still remains a problem for me and I am not really confident anymore that I can work through it. I do know I will try and perhaps that is the first step.

Even if I can just LIKE my body that would be a start! I do have days when the simple appreciation of not being in a flare and being able to move with some degree of ease and comfort gives me a certain confidence that extends to how I feel I look. It is amazing how pain and lack of mobility can influence how you see yourself. Of course, coupled with the poor body image is the struggle to stay physically active and how that most certainly influences how we look and feel.

We need to change our mindset to reflect positive reasoning for working out not negative ones! This is easier said than done. But if we practice affirmations and positive self talk coupled with not allowing ourselves to be sucked into the body image garbage that surrounds us from all sides, we can develop a healthy and positive self image so that in time, when we look in that mirror we see a perfectly normal, healthy and yes, attractive person looking back at us!

Monday, September 14, 2015

This is a question that those of us with an ever changing, ever present chronic disease face literally every day. I often find myself quietly asking myself if today is the day when my next RA flare will commence.

When I first wake up I do a "joint check-in" just to see where I stand on that given morning. Is today the day that the answer to that question "is it safe yet?" is a resounding NO or am I spared for another day.

My greatest wish is to wake up confident that this day will be without pain and with no possibility of a flare. I would jump for joy if I knew without a doubt on a given day there would be no chance of a flare or unwelcome pain. I know that is not possible but it sure is nice to dream.

The fact is I intend to hold onto that dream. You may wonder why. Well for me it is all part of keeping a positive approach to life. If you do not dare to dream big where is the joy and hope in life? I simply will not succumb to the hopelessness and sadness that so often accompanies a chronic disease. Instead I will wake up each day with an attitude of YES IT IS SAFE! Happiness and joy are truly choices we make in life. Even when things are not going well, when pain is intruding on our every thought and movement, you can CHOOSE to deal with it....by utilizing the many strategies that I have highlighted here in my blog over the last several years and lots of other sources as well. Exercise, guided imagery, consulting your medical team, reaching out to family and friends, just to name a few options that you have at your disposal.

You are never out of choices if you only take the time to look. Don't be complacent. Be proactive and you will always be able to handle what lies ahead and when that feeling of doubt creeps in you can push it away confident that you are equipped to deal with any and all eventualities thanks to the time and work and effort you have put in to managing your RA! Nan